Harrison’s Fund is a local charity that is committed to finding a cure for the 2,500 children in the UK who have Duchenne Muscular Dystrophy, a fatal muscle wasting condition.
In Surrey, 1 in every 3600 males is affected with Duchenne Muscular Dystrophy. Considering that most people know very little about DMD, Harrison’s Fund and the organisers of the Mercer Surrey Half Marathon recognise how important it is to raise awareness of the fatal disease; and the work that Harrison’s Fund is doing to find a cure. Harrison’s Fund will continue their Title Local Charity partnership with the Mercer Surrey Half Marathon for 2018; a partnership which over the years has raised thousands of pounds to help fund the charity’s vital research.
The charity was started by Alex and Donna Smith after their son, Harrison, was diagnosed with this rare disease in January 2011. He was just 4 years old.
Alex is pictured pushing Harrison in his chair at the Mercer Surrey Half Marathon. Like all teenagers with DMD, Harrison has sadly lost the ability to walk. Children with Duchenne may eventually lose all muscle function in their body, and may die in their late teens/early twenties from heart or respiratory failure. Harrison’s Fund is doing everything they can to try and change this and prevent this from happening.
1. Duchenne is classed as a rare disease, affecting 1 in 3600 boys.
2. 100 baby boys are born with DMD in the UK every year.
3. Duchenne affects 300,000 individuals worldwide.
4. Duchenne is a disorder of the Dystrophin gene, the largest protein-producing gene. There are 79 exons on the Dystrophin gene, and a mutation in any one of these exons is all it takes to cause Duchenne. Dystrophin is a protein essential for the stability and repair of muscle cells. Those with Duchenne are unable to produce Dystrophin, and without it, every muscle in the body will eventually waste away.
5. Those with Duchenne usually appear healthy at birth, but often struggle to meet certain developmental milestones, such as being able to run and climb like healthy children and they may fall often. The typical age of diagnosis is around 5 years old.
6. Walking ability is typically lost between 8-12, with a strong decrease in arm function generally occurring between 10-16. Those with Duchenne are not expected to reach their 30th birthday, in fact some don’t even reach their 20th. For some this decline may occur sooner, and some children with Duchenne may never walk at all.
7. Unlike most disorders, Duchenne occurs across ALL races and nationalities. It could happen to any family and around a third of cases are caused by a new genetic mutation with no previous family history.
8. Females can get Duchenne too. The odds of a female having Duchenne of the same severity as boys is very rare (1 in 50 million) but it does happen.
9. Those with Duchenne often have unusually large calves, known as pseudo-hypertrophy. It’s caused by dying muscle cells being replaced by fat and scar tissue.
10. Currently there are NO effective treatments for the majority of those with Duchenne, and it is 100% FATAL.
As a leading charity for DMD research, Harrison’s Fund aims to find a cure for DMD, or at least find a way to slow down the effects of the disease significantly – before it has a chance to “dim the twinkle in Harrison’s eye.” The charity is in contact with the best organisations in the world that are fighting DMD, and it’s clear that for the very first time there may actually be a chance of a major breakthrough. Over the past few years, scientists have made giant strides in gene therapy and molecular medicine, and pharmaceutical companies have begun investing in research that may well bring DMD therapies to market.
Harrison’s Fund needs your help to take advantage of this momentum. You can help by…
– Sharing this post to help raise awareness
– Making a donation to Harrison’s Fund
– Fundraise by running the award-winning Mercer Surrey Half Marathon
To run the Mercer Surrey Half Marathon as part of the Harrison’s Fund team, please purchase your ticket from the charity directly HERE.
For more information, visit HarrisonsFund.com or contact Juli – firstname.lastname@example.org